Supporting the health and wellbeing of children and young adults living with HIV

Younger Children

Babies under a year-old need testing for HIV more urgently as they are at greater risk to infections that can seriously harm them, compared to older children.

When you are preparing to have your baby or young child tested, talk to the HIV paediatric nurse or doctor who will be doing the test. If the child is old enough to need an explanation, the nurse or doctor can help you work out what you can say. That explanation can be very simple and does not necessarily need to mention HIV.

Some things you may tell a young child about the test

“We need to check your blood to make sure that your body has everything it needs to keep you healthy and well.”

“Mummy has a problem with her blood and this can mean she gets a bit poorly; we want to make sure you don’t have the same problem with your blood.”

Older Children

Depending on the age of the child, you can work out what the child will be told. 

We believe that talking openly about HIV in the family (as with any other health condition) is a good thing. It shows children that HIV is not something to fear and means you can support each other as a family. Sometimes, needing to have a child tested can be a prompt for parents to talk about their HIV status with their child, which might be something they have been putting off or waiting until the “right time.”

Read this page on sharing their HIV status with them, which will help you think about how to talk to your child about this.

If you feel you aren’t ready to tell your child about your HIV status, they still need to be tested and there are ways of talking to them about this without directly talking about your HIV.

You still have the right under the law to have your medical confidentiality upheld – this means no one should tell your child you are living with HIV. But you also need to remember that health professionals are not going to lie to your child and you cannot ask them to do this.

When a child is seen as being able to make their own decision about whether to be tested (see consent), the law says that the child needs to know what they are being tested for and why. As with adults, they need full information to make their decision about whether or not to be tested. 

You also need to prepare what you are going to say to the child if the test comes back positive, as then they will need to know they have been living with HIV and how they got it. Planning everything in advance is the best way, so you can support your child. Look at planning to talk about HIV to help you prepare.

Some things you may tell an older child about the test

If the child has been told their mother is living with HIV:

“Mum is living with HIV which means she has a problem with her blood which can mean she gets a bit poorly. We want to make sure you don’t have it too. If you do have it there is medicine that can help you stay healthy and well.”

If the child has not been told their mother is living with HIV: 

“We need to do a general health check to make sure you are healthy and well. Are you happy to have a blood test to check for infections? This would test for infections such as hepatitis B which can affect your liver; and HIV which is a problem with the blood but can be treated if we know you have it.”

If the child was born abroad:

“We would like to do a blood test to check for different blood-borne viruses which are more common in the country where you were born. Blood-borne viruses are things like hepatitis B which can affect your liver; and HIV which is a problem with the blood but can be treated if we know you have it.”